As the parent of a child with special needs, I have experienced my son being given many labels and diagnoses by both the medical and educational community: physically challenged, seizure disorder, etc., while I, on the other hand, have been given just as many, if not more, labels, albeit unofficially, by everyone from doctors, school staff and relatives, to the nosey checkout lady in the grocery store. Here are just a few I'd like to share:
Terrible Palsy - A condition in which onlookers and people in the community tell parents how terrible life must be raising a physically challenged child. This condition manifests itself through pity and audible sighing of those around you. Terrible Palsy can be deceiving because you can be asymptomatic for weeks, months, or even years, and then just when you and your family are feeling really good about your child, it can present itself in the form of a condescending pat on the head or a blessing from an anonymous busybody. Best known treatment is to carry a list of snappy comebacks in your pocket or a large bag of peanut M & Ms.
Shlepilepsy - A compulsive condition in which parents feel the need to shlep from doctor to doctor and specialist to specialist in order to seek help and find answers for their child with special needs The only known effective drug for this illness is caffeine, primarily given to parents to keep them awake while driving to and from appointments.
Oughtism - This condition strongly affects the guilt center of a parent's brain. Oughtism is transmitted by doctors, professionals, and therapists who constantly and relentlessly tell parents "you ought to do this….you ought to do that…" for your child. The only known treatment is to temporarily unplug your phone, gather information, and trust your own gut to do what's best for your child.
Oy Vay DD - This condition is usually diagnosed by mahjong-playing lady friends of your mother or mother-in-law upon hearing of your child's disability. The best known treatment for this condition is to avoid economically priced restaurants between the early-bird hours of 4:00 and 6:30 pm.
Nonverbal Yearning Disability - This condition affects many vulnerable parents with dreams for their children. It manifests through knowing what you desperately want for your child, but when no one acknowledges the possibilities you question yourself as to whether or not you actually spoke your desires out loud. Suggested treatment is to tape record your school meetings and play the tapes back to an impartial witness.
Dystrustia - A disability that usually flares up at school conferences and IEP meetings, in which everything the team is telling you doesn't make sense and seems to come out backwards. The only known effective treatment for this issue is a spy cam or a FOIA (Freedom of Information Act) request/documentation.
Pain in the Aspergers - This is a label usually given to parents like myself by school staff. It is often assigned to conscientious Moms and Dads who advocate strongly for their children with special needs. The most effective treatment - keep up the good work.
OHI/Otherwise Heavily Intoxicated - A label given to parents so stressed by their child's health issues that they seek to self-medicate. My own suggested treatment - substitute chocolate.
Auditory Due Processing - An issue affecting wronged parents in which everything they are told by the District makes them realize they need to file for Due Process. The most effective treatment is to talk to a special education attorney ASAP.
Reprinted with permission by author.
This article first appeared in issue #13 of Down Syndrome Amongst Us